Rainbow after the Storm

“The soul would have no rainbows, had the eyes no tears.”  John Vance Cheney

Darryl got a new job, I was pregnant and we became the proud owners of a stately little brick cape on a hill in an old section of town.  The anticipation of having a baby was clouded only vaguely by the possibility they would have GSD.  Glycogen Storage disease is autosomal recessive.  http://www.uic.edu/classes/bms/bms655/lesson5.html   Every one of my pregnancies would have a 1 in 4 chance that the baby would be born with the disorder.

I worked for a temp agency, received good prenatal care and spent hours preparing our house for the new beginning of our family.   The pregnancy was uneventful, except for the baby squirming inside me when he heard his father’s voice.

We lived though the blizzard of 1978 that encapsulated Boston for a week.  As spring melted and summer came into full bloom, so did I.  One pleasantly warm morning in August I put the finishing touches on our baby’s crib.  After closing the lid on the paint can with a few taps of the hammer I stood at the counter to prepare a peanut butter sandwich when my water broke.  No lunch for me.  The time had arrived to welcome our new little person.

My husband was out of the office and there were no cells phone, so I called my 62 year old neighbor who was a father of five.  Without a question he whisked me off to the hospital 30 minutes away.  I walked into the hospital feeling strong and ready for the next chapter of my life.  Sometimes it is good to be 22.

Seven hours later the pediatrician was present in the delivery room as well as a team of doctors and nurses.  I wasn’t sure how they thought they could help.   My delivery was considered high risk because of a previous sibling with glycogen storage disease.  An IV maintained my blood sugar so baby would not begin his life with hypoglycemia…just in case.

Our son was born and laid on my belly.  I can still remember the warm weight of his body on my body.  Scott was born with a normal blood sugar that dropped within a few hours.  His tiny heels became blue from lancets sticks.   His desire to survive was strong.  He nursed like a trooper.

The attending physician, residents and my pediatrician all had opinions about how this infant should be nourished. I knew that lactose in milk should be restricted, but I also new there needed to be balance.  I wasn’t going to nurse him forever.  I wanted to nurse my little one for all sorts of reasons.  I felt like I had failed Natalie and wanted this baby to have a stronger immune system. I wanted some control over what was happening…again.

The rocking chair cradled my sore body as my new little son with GSD hung onto my breast, sucking life into himself. Doctors had to move their discussion out of the nursery.   I am guessing they didn’t want me to hear how divergent their opinions were about what was or was not good for my son.   Dr. Crigler told me I could decide, so I did.

Lesson Learned:  Even when a group of people have the same information, they can disagree on how to move forward.

2 thoughts on “Rainbow after the Storm

  1. Dear Iris, my heart is bleeding afresh for you after reading the last few posts. I am grateful you had the strength to share Natalie’s story with us. My mom was so pleased you made the time during your visit to see her and let her meet Natalie. I know that you know she is not lost to you, just separated for a time and she will always be yours.

  2. Kathy, that is what has kept me going over the years….my faith, that this isn’t the end. I just got back from a conference in Las Vegas where many parents gathered to learn the most recent advancements in GSD. My heart ached for newly diagnosed children whose parents were afraid and came searching for information that would give their child a better life. God bless the physicians who have dedicated their lives to this group of disorders.

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